Question
Should I start treatment immediately or very soon?
7 September 2012. Related: All topics, Newly diagnosed, Starting treatment, Support.
Hi, I was diagnosed HIV positive last week and the doctor said i should start treatment immediately or very soon. Is that ok or should i wait for months? I am from Nigeria.
Answer
Hi
Thanks for your question. It is good that i-Base is useful in Nigeria.
Hope are you coping?
I ask this because finding out you are HIV positive is never likely to be easy, even if you thought this might be possible. It then takes time to the news to sink in. And while you are dealing with the shock it is difficult to take in other information that is also important.
So your doctor may be giving you a little time to let the initial news sink in before starting you on treatment. This is sometimes important because the medicine is extremely effective, but only if you take it – and that means virtually every dose on about the right time.
So sometimes it is better to wait a week or longer so that when someone starts treatment they are ready for it, and committed to making it work.
The medical need for treatment is first decided on whether you have symptoms. Anyone with HIV-related symptoms is usually recommended to start treatment. The main exception is if the symptoms are in the first weeks after infection, in which case it is usually okay to wait because these will usually resolve.
If you don’t have symptoms, the decision is based on the result of a blood test called your CD4 count. This gives an indication of how HIV may have reduced your immune system.
Don’t get too worried about about the first result. It is just a number, and there is a lot of variation between different people. But if your CD4 count is less than 200, treatment is recommended in all countries.
The lower below 200 it is, the more or a risk you take by delaying treatment. So at 190, 180, 170 etc, there is still a risk, but a few weeks may not make much difference. Below 160, the risks from other infections steadily increase, and starting treatment in the next few weeks is a good idea.
If your CD4 count is less than 100 and certainly if less than 50 the importance of treatment is even stronger. You may feel well, but you have just been lucky.
In the UK, treatment is currently recommended when the CD4 count is around 350. Most other countries changed in the last few years to also starting at the higher level of 350.
Some countries, including the USA, recommend starting at 500 and some even earlier, when someone is diagnosed, at any CD4 count. This is partly related to the choice of treatments that are available.
These recommendations are all made by experts and doctors after looking at the same results from the same research studies. So the higher the CD4 count, the more the decision is based on the interpretation of risk rather than definite evidence. If your CD4 counts is above 350, this gives you as the person taking treatment, and your doctor who prescribes it, a lot of flexibility to decide when starting treatment will be right for you.
Finally, I have gone into this detail because the same words time can be interpreted differently depending on how you hear them. Any word about time needs to be backed up by something measurable like the numbers of days or weeks or months or years.
One doctor might say “start treatment immediately or soon” and mean in the next few weeks or months. But you might hear this as “I need to start by 5 pm today”.
Similarly a doctor might mean that s/he wants to start you today but you interpret this as “any time in the next few months is probably fine”.
Please talk to your doctor about what they mean exactly. Ask about the risks and disadvantages of your options. Without the results of your CD4 count the information here is very general. Your doctor is likely to be giving you good information, and you are good to get information from other sources, but ask your doctor exactly what s/he means.
As many of the questions we get come from people who have been diagnosed late with low CD4 counts, you should be aware that is is possible. The sooner you start treatment though, the sooner it can start to work. Even people who start with a CD4 count under 50 can respond just as well to treatment and go on to lead full and active lives.
See this Introduction to Combination Therapy for more information.
Good luck – and please let us know how you get on.
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